Thursday, June 9, 2011

Ass Burgers?

In 29 days Lily will be two years old.
That almost breaks my heart to say!
The closer we get to this day, the more anxious I become. Why? Because most parents of children with Asperger Syndrome say that's when they started to notice their child's symptoms.

What is Asperger's?
Here's the easy Wiki Answer:
"Asperger syndrome (AS) is one of the autism spectrum disorders (ASD) or pervasive developmental disorders (PDD), which are a spectrum of psychological conditions that are characterized by abnormalities of social interaction and communication that pervade the individual's functioning, and by restricted and repetitive interests and behavior "
When we started doing research about A.S. after we found out that Eamon has it, we learned several things. Like, first of all, AS is NOT Autism. One of the biggest debates going on in the community right now is that there are certain people want to group in people with AS with Autism and label them "High Functioning Autistic". Some people in the AS community find it very insulting, we're not even sure if Lily has it and I've already taken the stance that this should NOT happen. We've also heard the numbers of how many children are going undiagnosed, and MISdiagnosed leading an overdiagnosed population of children with AS, and an underserved population of children who are going without help. [Not to mention the small population of adults who have it, but were just labelled "disruptive" in school who are still struggling with their day to day lives because communication is such a struggle.] Researchers are also finding a link that suggests it's being passed down genetically so for quite a while I've been waiting to see what-if anything-comes up with Lily.

Have you ever noticed how many pictures I have of this beautiful girl's eyelashes?

It's because I have a never ending stock pile of them on my computer. I could post a different picture of this sweet baby looking down every day for the next 3 years. Knowing that one symptom that is noted for children her age is poor eye contact is the first thing that gave me suspicions. Talking to Lily is very difficult. She doesn't look at me in the eyes. When I take her picture, it's WORK to get her to look at me, which is great from a photographer stand-point, since I need all the practice I can get, but the day to day stresses me out. I'm from a "high context" family. Nearly all of the conversations between my mom, my sisters, and me are had with much more body language than words. Being in a house where I've had to COMPLETELY change the way I talk has been extremely taxing on me, but it's easier for me to change than the rest of my family. Anyway, back to Lily. When I talk to her it's this constant "look at mama" conversation because it makes her SO uncomfortable. She looks at me for 3-5 seconds TOPS then trails off, then back again, then darts off. When I see how other kids her age interact with their parents, I get jealous. At first I thought Lily was just disobedient, but now I'm really able to see how uncomfortable it makes her.

Lily also had PHENOMENAL verbal skills for her first...15? months. I can usually understand what she's trying to tell me, but that's because I'm Mama. I can piece all of her fragmented thoughts together to work with her. But then I hear other kids her age and it's just unsettling. Lily knows lots of words, but she doesn't put them together. When I say "Lily asked for an orange" Lily actually just says "Orange?" But I'm finding out that most children her age say "Mama, want orange please." Lily's friend Eliza is four days younger than her and physically developed slower than her [actually, it was normal, Lily just started sitting, crawling, and walking, like a super baby] but her communication is just overwhelmingly amazing. On one hand I really like for them to hang out because they're the same age and have a lot of fun together, but on the other, it always puts a knot in my stomach because all I can think is "Why isn't Lily saying that?" What really killed me is when "Ziza's" daddy said that she told him "I love you" unprompted. I actually started crying. Other than one time when I sat with her for 30 mins teaching her how to say it, and she did say it-ONCE-, Lily's never told Eamon or I she loves us. [aaaaand there are the tears.] I hear that this act of saying these three little words is what bothers a lot of parents the most. 

Which brings us to empathy. THIS is where we might be out of the woods. Is she fascinated with one thing? Yes. Does she get upset if her routines are disrupted? Quite certainly. [I'll tell you about dinner time one day...oy.] Are her fine motor skills something to brag about? Not at all. Does she pretend? If you call throwing flower, salt, raisins, dog food, and water in a bowl "pretend" cooking, then yes. But lack of empathy, one of the biggest indicators of AS, might not be something Lily has. I only say this because when a song with a sappy or dramatic melody comes on, it makes her well up and cry. She doesn't cry when someone else does, it's mostly the music thing, so we'll see.

I'm opening myself up and talking about this because I want to know if any of you parents out there have children who are diagnosed with Asperger's Syndrome. I'm not doing it to have her diagnosed over the internet or anything like that. I've also debated sharing this for quite some time because I don't want anyone to ever treat my child [or anyone in my family for that matter] differently because of who they are. You bet your ass I will never, EVER introduce Lily by saying "This is Lily, she has AS" how unfair is that? That doesn't mean that if she does have it that I'm going to hide it from her...god no. Since I'm homeschooling I want to know as much as I can to help my little girl the best that I can. I love her so much and just want her to succeed.

So anyway...feel free to talk about your experience with AS, what signs did you first notice? What are some misconceptions you had/have? What do you want to know more about?

Happy Thursday!


Stacey said...

Hi Mae! I found your blog through my (our) friend Hannah T.! Beautiful girls you have there, just stunning.

I know nothing when it comes to Asperger's, but I do know that my oldest son, Will, hardly talked at all when he was 2. He had a bunch of words that he could say, but really never put words together. He finally started talking around 27 months, and now at 31 months is saying everything! Every child learns at a different rate. Lily will start talking when she's good and ready!

Mae Burke said...

Hi Stacey! Nice to hear [read?] from you ;]
The only thing that is really weird about her verbal development is that she learned SOOOO fast, and then regressed.
She used to call our dog "Russ" [his name is Rusty] and now she just calls him dog. She used to talk about cats all day long and say "cat" now she calls them "eoows" [like meow] I don't know...I mean you're right, it's just weird too me.

MamaEm said...

Hi Mae :) I've just been following since your second's birth, and haven't commented yet- but wanted to say I love the honesty with which you write about so much of your life.
I'm a Special Ed teacher (taking a break for mommyhood), and taught kids with all forms of autism for the past 5 years. If you ever want someone to answer some questions, I'll do my best. I wanted to say that having your daughter assessed for communication skills is a *good thing.* Many kids go through a few months of speech therapy and never need help again, but the younger they are when they start, the better the outcome. Just something to think about- and if it isn't necessary, you'll be able to rest your worrying heart a bit, which it sounds like you need. You're very brave to face this fear head on. Lily is very blessed to have a mama who is so aware and so concerned.

Sarah R said...

My son is on the spectrum; diagnosed with autism at age 6 although he received services for "speech delay" since age 3. You know her best, Mommy. Follow your instinct. Our pediatrician told us at first that my son was deaf, then retarded. We ended up getting tubes in his ears at one point, which helped with his hearing. Speech therapy helped a lot. We still have some issues; he is almost 13 and still doesn't look at me much when he talks, but we do communicate quite well. We also used a PECS system for a few years, plus some sign language. You can also ask me questions any time you want. I'm not a teacher, just a mom who went through it.